Beatrice was placed on the top of the UK transplant list awaiting a heart, but she became much weaker and required much more medical support. It became clear on February 23 that she was dying and would be unlikely to survive long enough or be strong enough for a heart transplant.

We knew our little girl was just too tired and could fight her battle no longer. We were beyond devastated.

On the morning of February 24, after a long night holding her in our arms, we made the decision to let her go. We also decided that we really wished to receive the support of EACH and so the team at GOSH and EACH made arrangements for after her passing. At 1pm on February 24 she passed away in my arms very peacefully, holding mine and her daddy’s hands.

It was after this that EACH really stepped in and gave us the most amazing support. We headed back to Norfolk the next day and then we were able to stay at the hospice. The hospice made arrangements for Beatrice to travel home to Norfolk and we met her at Quidenham Hospice.

Beatrice’s fundraising legacy

Six-week-old Beatrice Octavia Iris Smith had just celebrated her first Christmas when she was diagnosed with a rare heart condition.

The youngster faced an almost impossible battle, and when she died just six weeks later, she inspired a fundraising legacy in her memory.

Beatrice’s mum Leigh Smith was joined by more than 40 other dedicated fundraisers on a 22-mile bike ride on Saturday to raise cash for the East Anglia’s Children’s Hospices, Great Ormond Street Hospital and The Norfolk and Norwich University Hospital.

Mrs Smith, of Warwick Street, Norwich, said the ride, which went from the NNUH to the EACH hospice in Quiddenham, had been emotional, but rewarding.

“We are always astonished by how much support we have had. It was really wonderful and a great day out for everyone.

“It showed how many people she affected – I was a very proud mummy,” she said.

The money raised will also go towards the NNUH and Beatrice’s Brighter Future Fund, which was set up at GOSH to raise funds for a new heart and lung bypass machine,

So far, more than £11,000 has been raised, with another £3,000 from Saturday’s bike ride.

“We hope that through fundraising for these three charities we can help to give other families and children in similar situations the chances Beatrice and we have been given. It’s strange to consider ourselves ‘lucky’ in unluckiest and saddest of situations, but for Beatrice’s life we count ourselves very lucky,” she said. “There can never be enough thank yous or words to express our gratitude.”

As soon as we arrived we were made to feel at home and everything possible was done for us to allow us to just spend time in the most peaceful of surroundings, saying goodbye to our beautiful little girl.

She arrived in a Moses basket and had her own room, with her name on the door and was cared for with such respect and dignity by everyone. As a parent we could not have asked for a better way to say goodbye in the worst of situations. She looked angelic.

The staff provided practical support in booking appointments and helping with funeral arrangements which was invaluable in a time when we were barely functioning.

They also gave our son Elliott, who is four, all the support he needed. He was able to spend time with the play therapists having fun and being a child after weeks of living in and out of hospitals, which gave Toby and I the precious time we needed to sit with Beatrice and say our goodbyes.

While Beatrice was at Quidenham, we were able to all stay as a family together, knowing that she was nearby, and this was such a comfort at the darkest of times.

All the mundane day-to-day worries such as cooking and cleaning were taken away, allowing us to just be with our daughter as a family. We were able to do lots of memory work with Beatrice, creating keepsakes that have now become the most treasured of items.

As we returned to Norwich to organise funeral arrangements, we felt immense comfort knowing that she was in such a caring, loving and respecting environment. That for us was so important.

The time at the hospice with Beatrice was just the start of the support we have received from EACH. Both Toby and I have had counselling and I now attend the bereavement support group. This is invaluable and provides a time when I feel I can be with others who really understand the agony and pain of losing a child.

EACH has also provided us with opportunities for days out with Elliott and times where we can just be as a family and remember Beatrice and try to tread the new path we now find ourselves on.

There can never be enough words to express our gratitude. For us, having the time staying at Quidenham with Beatrice after she had passed away was so important. In the darkest and most painful of times, EACH has given us the best in the worst possible situation. We now have positive memories of our time at Quidenham and the images of how peaceful Beatrice was there and how well they looked after her to keep us going through the most difficult of days.

As a mother, you never want to let anyone take care of your child and this feeling is even greater when they have died. I was so apprehensive about leaving my little girl alone, but once at the hospice I knew she couldn’t have been in better hands. We had the time to say goodbye and say all we wanted to say. That now counts for so much.

We felt and still feel that if we are struggling, we have the help of Quidenham to call upon and now have a new network of people who can understand the unwanted journey we now take. We’ve found their advice, support and experience in dealing with grieving children immensely helpful in assisting us to help Elliott deal with losing his little sister.

Without the support of EACH this desperately hard situation would have been so, so much harder.